A few days after I had Ellis I had to take her to her Pediatrician for a check in. Since I had just had her, I was still on driving restriction. My Dad was behind the wheel that day and we were chatting on the way home.

I was telling him how much being in doctors offices, constantly for the past 3 years, had taken its toll. Don't get me wrong, I told him, I'd take fighting cancer again any day of the week to have Joel here again. But as much as I missed my husband, I don't miss fighting cancer. Cancer is a horrific battle and it has left its scars on me. I was glad to be done with all things medical for awhile.

I replayed that conversation in my head many times in the weeks following as I sat in the PICU. Oh the irony. There I was, starting to feel a respite from my life being consumed with doctors and appointments and hospitals-now it has become that once again even more so.

But I have my girl, I have my girl.

It was the greatest honor of my life to stand beside my husband and care for him through his illness. And it will be the biggest honor of my life to do the same for my daughter in her recovery. As bad as it is, the alternative is worse. I can undoubtedly say that.

But another thing I will say, is being a caretaker is HARD. It's draining in every way possible. The emotions and stress are a struggle. Watching someone you love in pain breaks your heart. And now I've had to do it not once but twice. It's beyond comprehension.

I have a lot of help. My family is amazing and thankfully only a block away. I have incredible help during the day with the kids. I have girlfriends who offer to come help when they can, bring meals and leave chocolate on my doorstep. I can't imagine getting through it without the support system I have. Because even with that support system it takes every ounce of energy I have to put one foot in front of the other every day. It's just not easy. There's no way around it.

Last week I stepped down from my job, and the career I've had for the past 8 years, in order to solely focus on Ellis. It wasn't even a question in my mind. I want to take the next year, which is such an important year development-wise, and give her every bit of what I have. We push her already to do play-mat time and tummy time. She hates it and we get a kick out of her wails as if we are torturing her (as evidenced in the picture). But you know what? As mad as she gets she still does it. She holds herself up. She gazes at her toys and she hits them with her little fists. Milo and I cheer her on and celebrate each and every achievement. She is moving forward more and more. There's so much satisfaction in seeing it take place.

All that to say, it's hard to take care of someone and to lay down your life for them. Be it your parents, your spouse, your child, it's just not easy. At the end of the day though as much as you hurt for their pain you also get to delight in their celebrations. And in those moments, there's no place else I'd rather be.

Sarah Rodriguez Rhodes

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Ellis Update: Today was a hard morning, guys. We got to the hospital & things just felt all wrong. I don’t know how to explain it other than that. Then the anesthesiologist had issues with some secretions Ellis was having that we were told amplified her risk during the surgery while under anesthesia. Given the past things we’ve walked through, we just decided it wasn’t a risk we were at all willing to take. So we made the decision to go home, re-group & do the surgery another day. Since the surgery is elective we had our medical teams full support in this decision. We are home now & doing well. This wasn’t an easy decision to make. For months we’ve prepared mentally, emotionally, schedule-wise, financially etc for this day. But we have to be lead by peace. And if those giving her medical care also weren’t completely at peace, it just wasn’t the right time, for whatever reason. I don’t always understand the “why” but I won’t always & I’m ok with that. We appreciate your prayers & promise to keep you informed of when her surgery will be in the coming months. Also, the day wasn’t a complete loss...Ellis did get to hang with the cute hospital dog-so at least that part was a win ☺️ Looking for some kind of humor-it’s been a rough day.

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